Oh, my - what an emotional rollercoaster of a day. This morning I went to see a friend and helped her out with some computer issues and she took me out for lunch. We had a good time. From there I went to see Meg, (the therapist who has helped me through this life-changing event) dragging all my baggage, worries and endless questions with me. I can't tell you all the things we discussed, the insights she gave me, but I felt better when I left. From there I went to spend time with Rand. He finished the 300 piece puzzle and we glued it together. A friend came by, the three of us went for a walk and then Rand wanted to start one of the sports puzzles another friend gave him. In between times, he ate a freshly picked tomato from our garden and loved it! He did not mention my absence yesterday, nor did I. I told him that we now have a new fountain and he smiled and nodded with some understanding. We reviewed his schedule for July, as it stands now, finished up the June tractor calendar and flipped over to the July center-fold a day early! Wow - that tractor is a real beauty! When I left I did not mention that I won't be there tomorrow as I have the SJ Rep play in the afternoon. As several have said, Rand lives in the moment and the moment constantly changes and so does his attention. If I'm not there, it probably doesn't occur to him that I'm gone. He was so surprised and happy to see me today - I could have been gone for a month rather than 24 hours.
In a nutshell, Meg and I discussed the fact that I am a "do-er." I have gotten through much of this nightmare by "doing" things for Rand to make him the best he can be. I set a goal, know the steps I have to take to get there, do them, accomplish that goal and move on to the next one. I've done that with all aspects of my life and it is one of the ways I have worked through anxiety during my career, marriage, day-to-day living. Now that I am in the acceptance phase of our lives, I can see the end is in sight for things I can do for Rand. Arranging for his therapy is coming to an end, I've done about all I can do with the speech generating device, I no longer have to take on the medical establishment, call meetings, set the agendas, take notes, run interference for him. All of those things kept me up to my ears, focused and sane for seventeen months and Rand was my full-time job 24/7. That is coming to an end and I have few places left to channel my anxiety and energy. Maybe finding a van with a hydraulic lift, maybe locating a better lounge chair for Rand, but that's easy, piddly stuff. Meg is suggesting, as she always has, that I need to look out for myself. I need to find an outlet other than Rand. I've known the day was coming but it always seemed somewhere in the future - but now it is here and I'm rattling around in my cage not knowing what to do or how to handle it. She also mentioned some "Freudian Slips" that I made in our conversation that indicate my confusion and unsettled state. Sometimes I said "our or we," other times I said "my or I," as in "my house/our house; my car/our car; the tomatoes from our Farm/my Farm," etc. Where does Rand fit into my world? Am I "I" or am I "we?" What will I do when I no longer have to make his well-bring my top priority? Meg is sure that I will be OK, will land on my feet when all is said and done. But anxiety and worry are not something I handle well and my coping mechanism is coming to an end. Now I understand that it isn't worry and anxiety about doing the right things, but anxiety and worry about not having anything to "do." One day at a time, just one day at a time and it will all work out. It always does. But I want to know what to plan for next, I need to know what I have to accomplish in order to be helpful and satisfied, to make Rand the best he can be. The answer my friends, is blowing in the wind - I hate the wind! Will I ever be able to sit back and watch the world go by with out jumping on board and trying to organize it? I wonder - I sure hope so.
Keep Rand close.
Love,
Connie
Friday, June 29, 2007
Thursday, June 28, 2007
June 23, 2007
My sister, Annie, and I arrived at our respective homes last night after a great week in Puerto Vallarta, Mexico. We got too much sun, ate too much shrimp, spent too much time in the water, drank some of the best and worst margaritas on the planet, bought too much silver, did so much sightseeing that we thought we'd drop over. All in all it was a wonderful week!
Rand was taken aback when I walked in to his room today - he was so happy to see me but wasn't quite sure what to say. I'm very tan, very sunburned and I had my hair braided by a vendor on the Malecon! Annie had her's braided too - her's is cute but I look like I've been scalped! He got over it quickly but suggested I ditch the braids ASAP! I will do that soon.
Rand and I talked a lot and went for a long walk. He has been doing puzzles like mad and Manny has been taping them together. I got some puzzle glue to bring him tomorrow. I'm not sure what to do with all the puzzles - I was hoping they would eventually be taken apart, put back in the boxes and passed along. No such luck.
The doctor was there this afternoon and pulled me aside to talk about Rand's weight. He's guessing that Rand has gained about 25 pounds. Uff da - he doesn't need to carry all that around. A few months ago I made a half-hearted attempt to suggest that visitors bring healthy snacks and treats for Rand, but now is it very important that we all do that. Please think twice about bringing him milkshakes, cakes, cookies and other goodies. Puzzles, magazines, non-fat coffee drinks, diet soft drinks, fruit chunks, etc. are all necessary choices now. Any food brought to him will be portioned out so he has some at the time and the rest saved until later. I'm the worst offender so it is back to the drawing board for me.
Rand had many visitors while I was gone and we both appreciate the time you took to stop by. Thank you.
It is good to be home - I missed Rand as much as he missed me. I am getting better about traveling alone, having experiences I can't reminisce about with him and not feeling guilty about being gone. Tomorrow is Monday but I will be with Rand - I'll try to take another day off later in the week.
Keep Rand close - he is the Sweetheart of the Western World!
Love,
Connie
Rand was taken aback when I walked in to his room today - he was so happy to see me but wasn't quite sure what to say. I'm very tan, very sunburned and I had my hair braided by a vendor on the Malecon! Annie had her's braided too - her's is cute but I look like I've been scalped! He got over it quickly but suggested I ditch the braids ASAP! I will do that soon.
Rand and I talked a lot and went for a long walk. He has been doing puzzles like mad and Manny has been taping them together. I got some puzzle glue to bring him tomorrow. I'm not sure what to do with all the puzzles - I was hoping they would eventually be taken apart, put back in the boxes and passed along. No such luck.
The doctor was there this afternoon and pulled me aside to talk about Rand's weight. He's guessing that Rand has gained about 25 pounds. Uff da - he doesn't need to carry all that around. A few months ago I made a half-hearted attempt to suggest that visitors bring healthy snacks and treats for Rand, but now is it very important that we all do that. Please think twice about bringing him milkshakes, cakes, cookies and other goodies. Puzzles, magazines, non-fat coffee drinks, diet soft drinks, fruit chunks, etc. are all necessary choices now. Any food brought to him will be portioned out so he has some at the time and the rest saved until later. I'm the worst offender so it is back to the drawing board for me.
Rand had many visitors while I was gone and we both appreciate the time you took to stop by. Thank you.
It is good to be home - I missed Rand as much as he missed me. I am getting better about traveling alone, having experiences I can't reminisce about with him and not feeling guilty about being gone. Tomorrow is Monday but I will be with Rand - I'll try to take another day off later in the week.
Keep Rand close - he is the Sweetheart of the Western World!
Love,
Connie
Friday, June 15, 2007
June 15, 2007
Rand's blood test results came back and it was 3.5 - way too high. The Coumadin Clinic folks want it at 2.5. Adjustments continue. Rand has stacked up all the puzzles he has done, one on top of the other, all under the green felt puzzle keeper. It makes for a lumpy surface for the newest puzzle - rows and rows and rows of Heinz catsup bottles on a white background! Two friends came to visit Rand today so we got the frame completed and left him with the miserable center! He was in good spirits and thoroughly enjoyed the company. I was glad they were there, too as it made my departure easier. Rand was sad, but it will be OK.
What timing - a tree that was killed by the frost last winter was replaced this morning and the new fountain for the entry way also arrived so I had them delivered at the same time while the landscapers were here. I made banana nut bread last night, used it to feed the landscapers and took the rest to Rand's House this afternoon. It is so nice to have the lighting, irrigation and planting issues taken care of.
This morning when I tried to get my boarding pass to Puerto Vallarta online, Alaska Air wouldn't allow it. The website told me to call Alaska to confirm the flight, which I did. When I was talking to the agent I asked what I had to do to get a boarding pass and she looked it up and told me I was going to be denied boarding - I wasn't going to be allowed to fly!! It turns out that I booked my ticket as Connie but my passport says Constance so the names don't match, no dice, no flying!! EOWZWER! New rule for International travel. I don't know how long I was on the phone - but I finally got my name changed and was allowed to print my boarding pass. In all the traveling we've done, I've always had Constance on my passport and Connie on my ticket with no trouble. Now is its big trouble! What a relief to have found that out a day early instead of at the airport! Whew!
I will be leaving early tomorrow/Saturday morning and will return Saturday evening, June 23. There will not be another epistle until June 24. Thanks to you who are going to visit Rand in my absence. Both of us appreciate it.
Keep Rand close.
Love,
Connie
What timing - a tree that was killed by the frost last winter was replaced this morning and the new fountain for the entry way also arrived so I had them delivered at the same time while the landscapers were here. I made banana nut bread last night, used it to feed the landscapers and took the rest to Rand's House this afternoon. It is so nice to have the lighting, irrigation and planting issues taken care of.
This morning when I tried to get my boarding pass to Puerto Vallarta online, Alaska Air wouldn't allow it. The website told me to call Alaska to confirm the flight, which I did. When I was talking to the agent I asked what I had to do to get a boarding pass and she looked it up and told me I was going to be denied boarding - I wasn't going to be allowed to fly!! It turns out that I booked my ticket as Connie but my passport says Constance so the names don't match, no dice, no flying!! EOWZWER! New rule for International travel. I don't know how long I was on the phone - but I finally got my name changed and was allowed to print my boarding pass. In all the traveling we've done, I've always had Constance on my passport and Connie on my ticket with no trouble. Now is its big trouble! What a relief to have found that out a day early instead of at the airport! Whew!
I will be leaving early tomorrow/Saturday morning and will return Saturday evening, June 23. There will not be another epistle until June 24. Thanks to you who are going to visit Rand in my absence. Both of us appreciate it.
Keep Rand close.
Love,
Connie
Wednesday, June 13, 2007
June 13, 2007
The technician who did Rand's blood draw today, drew the cutest angel on the tape that she put over the puncture. She drew it upside down so Rand could see it. Very cute! I haven't heard the results of the blood test - I hope it is back in the normal range. Last time Rand's blood was too thin.
Recently I ordered Rand a pair of slacks online. When they arrived, they looked too small. I took them to Manny and asked his opinion. He took the seams on the sides of the waistband and put the waist band around Rand's neck. The side seams did not meet at the back of his neck and Manny proclaimed them to be too small!! I've never seen anything like it - it is the way to measure a person in a wheelchair, who is bed-ridden, etc. How nifty is that?? I went home and tried it out on myself and it works! Neat-o!
Rand talked a blue streak today but I could only understand bits and pieces. He became frantic this afternoon, trying to tell me something. I couldn't understand what he wanted or was trying to communicate - he kept saying "play" and "Minnesota." Then I remembered - the more frantic he becomes, the closer he is to a panic situation and those occur when he can not remember his name. I told him his name and my name, he breathed a huge sign of relief, then repeated our names over and over, smiling the biggest smile. He was so happy to have his name back.
Rand worked very, very hard in OT and PT again this morning. His legs were shaking towards the end and he was tired. I wish you could see how much progress he has made since he started Out Patient therapy last fall. Now he can lift his right leg/foot off the ground, take normal steps and correct the outward turn of his toe. His legs are getting stronger and stronger - he does squats over and over, his balance is improving and he's standing straighter than ever. Laura, the PT, says that she's afraid that he is exceeding the Medicare criteria for progress and she will have to move him from twice a month to once a month. I just hate to see that happen.
Today we finished off the NASCAR puzzle. Rand waited for me to come because he couldn't figure out the printing on the puzzle - it said "Dale Jarrett" and it made no sense to him. He was in good spirits and lately there has been no moaning and groaning when I leave. Maybe he is making a similar adjustment to mine.
Keep him close.
Love,
Connie
Recently I ordered Rand a pair of slacks online. When they arrived, they looked too small. I took them to Manny and asked his opinion. He took the seams on the sides of the waistband and put the waist band around Rand's neck. The side seams did not meet at the back of his neck and Manny proclaimed them to be too small!! I've never seen anything like it - it is the way to measure a person in a wheelchair, who is bed-ridden, etc. How nifty is that?? I went home and tried it out on myself and it works! Neat-o!
Rand talked a blue streak today but I could only understand bits and pieces. He became frantic this afternoon, trying to tell me something. I couldn't understand what he wanted or was trying to communicate - he kept saying "play" and "Minnesota." Then I remembered - the more frantic he becomes, the closer he is to a panic situation and those occur when he can not remember his name. I told him his name and my name, he breathed a huge sign of relief, then repeated our names over and over, smiling the biggest smile. He was so happy to have his name back.
Rand worked very, very hard in OT and PT again this morning. His legs were shaking towards the end and he was tired. I wish you could see how much progress he has made since he started Out Patient therapy last fall. Now he can lift his right leg/foot off the ground, take normal steps and correct the outward turn of his toe. His legs are getting stronger and stronger - he does squats over and over, his balance is improving and he's standing straighter than ever. Laura, the PT, says that she's afraid that he is exceeding the Medicare criteria for progress and she will have to move him from twice a month to once a month. I just hate to see that happen.
Today we finished off the NASCAR puzzle. Rand waited for me to come because he couldn't figure out the printing on the puzzle - it said "Dale Jarrett" and it made no sense to him. He was in good spirits and lately there has been no moaning and groaning when I leave. Maybe he is making a similar adjustment to mine.
Keep him close.
Love,
Connie
June 12, 2007
A piece of advice, if I may. While you are still going strong and not in crisis, make a folder for copies of critical sections of your Living Will/Family Trust. Make 10 to 12 copies of your Powers of Attorney, Authorizations to DIsclose Protected Health Information, Advanced Health Directives and other pertinent documents for your self and for your spouse, if applicable. File it in a place that is handy, so you can grab it and go if the situation demands it. If you haven't done a Living Will or Family Trust, run - do not walk to the nearest lawyer and get it done now!!
I spent this morning (hours!) sorting out copies and originals of our documents mentioned above. During the time of extreme crises, I had to locate the originals and make copies for every hospital, nursing home, rehab facility, doctor and surgeon that Rand had contact with for seven months. I never seemed to make enough copies so was always making more and more and more. One hospital alone has seven copies as they couldn't seem to keep track of them! The bottom line is that today I finally had to get those papers sorted out, put the originals in the safe deposit box and make sure that there are copies at the house. The sad part is that I no longer have Rand's Power of Attorney with original signatures - but I have a few copies! I'm sure the original got mixed in and I gave it to some unsuspecting medical person somewhere down the line. I went through the safe deposit box again just to make sure, but it is gone. Please don't put yourself in that situation. Take care of it now while the going is good. Thanks.
Keep Rand close.
Love, Connie
I spent this morning (hours!) sorting out copies and originals of our documents mentioned above. During the time of extreme crises, I had to locate the originals and make copies for every hospital, nursing home, rehab facility, doctor and surgeon that Rand had contact with for seven months. I never seemed to make enough copies so was always making more and more and more. One hospital alone has seven copies as they couldn't seem to keep track of them! The bottom line is that today I finally had to get those papers sorted out, put the originals in the safe deposit box and make sure that there are copies at the house. The sad part is that I no longer have Rand's Power of Attorney with original signatures - but I have a few copies! I'm sure the original got mixed in and I gave it to some unsuspecting medical person somewhere down the line. I went through the safe deposit box again just to make sure, but it is gone. Please don't put yourself in that situation. Take care of it now while the going is good. Thanks.
Keep Rand close.
Love, Connie
Friday, June 08, 2007
June 8, 2007
A couple of years ago Rand bought a great red, white and blue, stars and stripes jacket for himself. When we got home from the trip he discovered that it didn't fit and it has been hanging in the closet ever since. That jacket became Thuan's American Citizenship present with Rand's blessing. He's going to wear it to the swearing in ceremony next Wednesday. How appropriate. Right after the ceremony, Thuan and his wife are driving to San Francisco to get United States passports!
Rand, a friend and I had Happy Hour together tonight. She brought four small bottles of champagne, munchies and we celebrated together! It was such fun. Manny had to break up the party so Rand could go in for dinner.
I made apple muffins for Rand's house today and bought a new flag for the pole on the garage door at his house. The current one is getting pretty ratty. Rand and I will put it up tomorrow.
I haven't heard from the guy from Detroit with the converted Honda Element. I thought he would be here by now. Someone asked about the status of "Mo", if it is a dead issue. Quite the contrary. Jennie, the SLP, is writing the grant to Medicare and Kaiser, which if approved, will pay for 80% of the cost. We have decided to go with the Cadillac version for a variety of reasons, including the fact that Rand will outgrow the VW version too fast. After she finishes the narrative, then we have to go back to the Kaiser SLP and get their evaluations, doctor's signatures, I don't know what all, before the grant can be submitted. Then Medicare and Kaiser have to approve it. All these hoops take time. I don't know when the Caddy will arrive - it could be several weeks or months yet. I'll keep you posted.
Keep Rand close.
Love,
Connie
Rand, a friend and I had Happy Hour together tonight. She brought four small bottles of champagne, munchies and we celebrated together! It was such fun. Manny had to break up the party so Rand could go in for dinner.
I made apple muffins for Rand's house today and bought a new flag for the pole on the garage door at his house. The current one is getting pretty ratty. Rand and I will put it up tomorrow.
I haven't heard from the guy from Detroit with the converted Honda Element. I thought he would be here by now. Someone asked about the status of "Mo", if it is a dead issue. Quite the contrary. Jennie, the SLP, is writing the grant to Medicare and Kaiser, which if approved, will pay for 80% of the cost. We have decided to go with the Cadillac version for a variety of reasons, including the fact that Rand will outgrow the VW version too fast. After she finishes the narrative, then we have to go back to the Kaiser SLP and get their evaluations, doctor's signatures, I don't know what all, before the grant can be submitted. Then Medicare and Kaiser have to approve it. All these hoops take time. I don't know when the Caddy will arrive - it could be several weeks or months yet. I'll keep you posted.
Keep Rand close.
Love,
Connie
Sunday, June 03, 2007
June 3, 2007
"Life is not the way it is supposed to be. It is the way it is.
The way you cope with it is what makes the difference"
Mark Twain
A friend sent me that quote today and it has real meaning. I hope I am coping in a way that makes a difference for Rand and for me - maybe even for some other people.
Our friendly passenger did not drive "over the hill" with us today - but will join us again tomorrow. I found out today that he is 52 years old - he had a stroke at age 50. That is very sobering. There is a new "demo" patient in the group this time and I doubt that he is 30 years old. He is far too young for that situation and it shows in his attitude. He is angry, argumentative, lashes out at the PT/OTs, is an unpleasant factor in an otherwise upbeat group. The instructors are so amazed at the progress Rand has made since they saw him in January/February. Not only his physical progress, but also his communication has improved so much.
Rand was very quiet today on the ride to and from Santa Cruz. He enjoyed his therapy time and Mason, in particular, worked him hard. When I left him a while ago, he seemed resigned, not happy, just resigned to the fact that I was leaving. He wants me with him 24/7 and his ability to understand that I can't do that comes and goes. I didn't take last Monday off because it was Memorial Day and this Monday we will be in Santa Cruz again. I will take the 11th off for sure.
Yesterday I got the letter from his doctor to be included in our Living Will/Trust/Advanced Health Directives, etc. It is also sobering to read that Rand is no longer capable of making decisions about himself and others. I know that, but coming in medical terms is another jolt. The copies are now all attached to the proper legal documents - another hurdle completed and another step towards peace of mind for everyone involved. I still have a knot in my stomach.
Keep Rand close.
Love,
Connie
The way you cope with it is what makes the difference"
Mark Twain
A friend sent me that quote today and it has real meaning. I hope I am coping in a way that makes a difference for Rand and for me - maybe even for some other people.
Our friendly passenger did not drive "over the hill" with us today - but will join us again tomorrow. I found out today that he is 52 years old - he had a stroke at age 50. That is very sobering. There is a new "demo" patient in the group this time and I doubt that he is 30 years old. He is far too young for that situation and it shows in his attitude. He is angry, argumentative, lashes out at the PT/OTs, is an unpleasant factor in an otherwise upbeat group. The instructors are so amazed at the progress Rand has made since they saw him in January/February. Not only his physical progress, but also his communication has improved so much.
Rand was very quiet today on the ride to and from Santa Cruz. He enjoyed his therapy time and Mason, in particular, worked him hard. When I left him a while ago, he seemed resigned, not happy, just resigned to the fact that I was leaving. He wants me with him 24/7 and his ability to understand that I can't do that comes and goes. I didn't take last Monday off because it was Memorial Day and this Monday we will be in Santa Cruz again. I will take the 11th off for sure.
Yesterday I got the letter from his doctor to be included in our Living Will/Trust/Advanced Health Directives, etc. It is also sobering to read that Rand is no longer capable of making decisions about himself and others. I know that, but coming in medical terms is another jolt. The copies are now all attached to the proper legal documents - another hurdle completed and another step towards peace of mind for everyone involved. I still have a knot in my stomach.
Keep Rand close.
Love,
Connie
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